Culture, Health & Sexuality

An International Journal for Research, Intervention and Care

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Community perceptions of obstetric fistula in

Malawi

Josephine Changole, Ursula Kafulafula, Johanne Sundby & Viva Thorsen

To cite this article: Josephine Changole, Ursula Kafulafula, Johanne Sundby & Viva Thorsen
(2018): Community perceptions of obstetric fistula in Malawi, Culture, Health & Sexuality, DOI:
10.1080/13691058.2018.1497813

To link to this article: https://doi.org/10.1080/13691058.2018.1497813

Published online: 03 Oct 2018.

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CULTURE, HEALTH & SEXUALITY
https://doi.org/10.1080/13691058.2018.1497813

SHORT REPORT

Community perceptions of obstetric fistula in Malawi

Josephine Changoleb, Ursula Kafulafulaa, Johanne Sundbya and Viva Thorsena
a
Department of Medicine and Global Health, University of Oslo, Oslo, Norway; bMidwifery, Kamuzu
College of Nursing, University of Malawi, Blantyre, Malawi

ABSTRACT ARTICLE HISTORY

It is well-documented that obstetric fistula, a severe birth injury, is Received 12 October 2017
caused by a prolonged obstructed labour that has not been Accepted 4 July 2018
relieved on time. Lay people often understand causation differ-
ently. This study sought to explore the awareness and local mean- KEYWORDS
ings attached to obstetric fistula in the rural parts of Malawi. We Malawi; obstetric fistula;
vesico-vaginal fistula;
conducted interviews with key informants and focus group dis- community percep-
cussions with community members in purposively selected com- tions; beliefs
munities in the central region of Malawi. We categorised data
using Nvivo 10 and conducted a thematic analysis. Findings indi-
cate that there is considerable awareness about fistula in local
communities; however, community members have very limited
knowledge about its causes. Participants associated obstetric fis-
tula with sexually transmitted diseases, the woman’s laziness to
push during labour, witchcraft and the husband’s infidelity, which
contributed to the isolation of the affected women. Strategies to
eradicate obstetric fistula in general, and its social consequences
in particular, should include more information on causes and pre-
vention. This may help to dispel misconceptions about fistula,
increase acceptance and support for women with fistula, and sub-
sequently improve the quality of their lives and the lives of girls
and women who may suffer from this condition in the future.

Background
Obstetric fistula is one of the most severe forms of childbirth complications, currently
affecting over two million girls and women in Sub-Saharan Africa and South Asia
(WHO 2018). The condition is caused by a neglected, prolonged obstructed labour
(Wall 2012). When labour is obstructed, the presenting foetal part compresses the sur-
rounding soft tissues against the mother’s pelvis. If untreated, the soft tissues die,
erode and form a hole between the bladder and the vagina in the case of vesico-vagi-
nal fistula and/or between the rectum and the vagina in the case of recto-vaginal fis-
tula. The hole leaves the woman with continuous leakage of urine and/or faeces and a
malodorous smell (Wall 2012).
The impact of obstetric fistula is multifaceted (Ahmed and Holtz 2007). For example,
physically, the incontinence can cause deep ulcerations in the woman’s external

CONTACT Ursula Kafulafula ursulakafulafula@kcn.unima.mw

ß 2018 Informa UK Limited, trading as Taylor & Francis Group
2 J. CHANGOLE ET AL.

genitalia, which may extend to the buttocks and thighs, resulting in pain and difficulty
in movement. Socially, the loss of the foetus potentially reduces the woman’s pros-
pects of a better marital relationship, especially in societies where childbearing carries
strong social expectations (Yeakey et al. 2009). The smell of urine and/or faeces sub-
jects the woman to social isolation, abandonment and divorce (Yeakey et al. 2009).
Lack of awareness and knowledge about the cause and treatment of fistula by family
and community members leads to misconceptions that may further subject the
woman to ostracism and stigmatisation (Kasamba, Kaye and Mbalinda 2013; Wall
2006). Psychologically, the loss of control over body functions may lead to anxiety,
depression and low self-esteem (Wall 2006), making life miserable. Economically, finan-
cial hardship and lack of support can lead to a spiral into poverty (Ahmed and Holtz
2007). A knowledge gap exists between the scientific community and lay people on
explanations of obstetric fistula and its symptoms, leading to negative speculations
about the condition and the stigmatisation of sufferers (Kasamba, Kaye and Mbalinda
2013; Kazaura, Kamazima and Mangi 2011).
In Uganda, Kasamba, Kaye and Mbalinda (2013) assessed the awareness about risk
factors of obstetric fistula. In their study, participants attributed obstetric fistula to sur-
gical operations, sexually transmitted diseases, the misuse of family planning and hav-
ing sex during menstruation. Similarly, in a study in Tanzania, Kazaura, Kamazima and
Mangi (2011) found that participants associated fistula with sorcery, delivery by oper-
ation, the physique of the woman, having sex before recovering from a childbirth-
related operation (Caesarean section) and prolonged labour. Such beliefs may nega-
tively affect the health care seeking behaviour of the affected woman. Kleinman,
Eisenberg and Good (1978) argue that in order to avoid conflicts that may arise due
to differences in interests and values, health care professionals need to take an inter-
est in the explanatory models that patients and others use. They further argue that
understanding beliefs, social meanings, patient expectations and therapeutic goals
puts health care professionals in a better position to plan and design effective inter-
ventions for the patient and her community. Unfortunately, studies to address such
issues are limited both elsewhere and in Malawi.
Malawi is one of the poorest countries in Sub-Saharan Africa, with the majority of
its population living below the US$2 poverty line (World Bank Group 2018).
Approximately 80 per cent of the population live in rural areas, where poverty, dis-
tance and poor road infrastructure make it difficult for people to access health care
services (National Statistical Office [NSO] and ICF 2017). Maternal mortality is still
among the highest in the region at 439 per 100,000 live births (NSO and ICF 2017).
Currently there is limited information on maternal morbidity. However, the high mor-
tality rate indicates a high morbidity rate, based on the fact that for every woman
who dies from complications during pregnancy, 20 more suffer from acute or chronic
morbidities, including fistula (UK All Party Parliamentary Group 2009).
Obstetric fistula has been one of the neglected conditions in Malawi, receiving
attention only after the launch of the End Fistula Campaign by the United Nations
Fund for Population Activities (UNFPA) in 2003 (UNFPA and Engender Health 2003).
Anecdotal reports indicate that approximately 20,000 women are currently living with
obstetric fistula in Malawi (approximately 5 per 1,000 women). Johnson (2007)
 CULTURE, HEALTH & SEXUALITY 3

reported a lifetime obstetric fistula prevalence of 15.6 per 1,000 women of reproduct-
ive age, while in yet another national community survey, Kalilani-Phiri et al. (2010)
reported a lifetime prevalence of 1.6 per 1,000 women of reproductive age. The
Malawi Demographic and Health Survey (MDHS) 2015–2016 reports that 1 per cent of
24,562 women (n ¼ 246) who participated in the survey had experienced obstetric fis-
tula between 2010 and 2015 (NSO and ICF 2017). The real prevalence of obstetric fis-
tula, however, is not known due to varying methods and reporting in these surveys.
Currently, there are limited data on awareness and how lay people in rural com-
munities understand and interpret obstetric fistula in the Malawian context. According
to the 2015–2016 MDHS (NSO and ICF 2017), only 43 per cent of women of reproduct-
ive age had heard of obstetric fistula. Previous studies in the country have focused on
women’s experiences of living with fistula before and after surgical repair. For
example, Yeakey et al. (2009) explored the lived experiences of women with fistula
and found high rates of divorce and stigma. They also reported high levels of support
from individuals closest to the women. In their follow-up study, the authors found
improved physical and social wellbeing among women after surgical repair. Similarly,
Drew et al. (2016) reported improved quality of life after repair in terms of ability to
remain continent and interact with the community. Both studies, however, failed to
explore how fistula is locally understood within the communities where the women
lived. Misperceptions about obstetric fistula may affect how people view and treat the
affected women, and also health care seeking behaviours of affected women. If inter-
ventions are to improve maternal health, prevent obstetric fistula and mitigate its con-
sequences, local definitions and connotations must be understood and incorporated
into such designs. The objective of this study therefore was to explore the awareness,
perceptions and local meanings about obstetric fistula in rural parts in central region
of Malawi.

Methods
Sampling and recruitment
This study was part of a larger project on the experiences of women living with
obstetric fistula in Malawi. Purposive sampling was used to select three districts.
Dowa, Lilongwe and Salima districts were chosen because large numbers of women
with fistula admitted at Bwaila Fistula Care Centre came from these districts. We pre-
sumed that the more women admitted with obstetric fistula from an area, the greater
the awareness, knowledge and experiences of staying with such women. Three fistula
ambassadors1 from the sampled districts approached chiefs in their respective areas
and explained the researchers’ intention to conduct a study concerning women living
with a condition of leaking urine and/or faeces following childbirth.
There were two groups of participants – key informants (KIs) and focus group dis-
cussion (FGD) participants. Women with fistula who participated in the larger project
assisted the researcher in identifying suitable KIs from their communities, while the
ambassadors were instrumental in identifying participants for FGD. KIs included chiefs,
chiefs’ wives, religious leaders, community-based organisation leaders, health care
4 J. CHANGOLE ET AL.

volunteers and health workers. Participants for the FGDs consisted of chiefs and com-
munity members, with both women and men being represented.

Data collection
Semi-structured interviews
The first author conducted 20 semi-structured interviews with the KIs using an inter-
view guide; interviews lasted 15 to 30 minutes and took place in the KIs’ homes or
offices. Questions focused on awareness and knowledge about causes of fistula, com-
munity attitudes towards women with fistula, the availability of community support
for women with fistula and integration of women with fistula into local communities.
KIs who were health care providers were asked additional questions about the avail-
ability of services and the challenges they faced helping women with obstetric fistula.
Interviews were conducted in Chichewa and were audio recorded with the permission
of participants.

Focus group discussions

Eleven FGDs were conducted, and each was led by the first author using a discussion
guide. A research assistant took notes, operated the electronic recorder and kept time.
FGDs were organised according to gender and status, and consisted of women, men
and leaders exclusively. There were 6–12 members in each group (Green and
Thorogood 2009, 127). Questions focused on participants’ awareness of women with
continuous leakage of urine and/or faeces following childbirth; the local meanings
attached to, and the perceived causes and risk factors for leaking urine and/or faeces;
how women with the condition were viewed and treated by people in their commun-
ities; and what support was available for women with fistula locally. All FGDs were
conducted in Chichewa. Chiefs were responsible for identifying convenient dates and
venues for each discussion within their communities. All FGDs were digitally audio
recorded with consent from the participants.

Ethical considerations
The study was approved by the College of Medicine Research Ethics Committee
(COMREC) at the University of Malawi (reference number P.03/15/1711). The study did
not require approval from the Regional Committee for Medical and Health Research
Ethics (REK) in Norway (reference number: 2014/2040/REK), but it was registered with
the Norwegian Social Science Data Services (reference number 43620). Written permis-
sion to conduct the study was also obtained from the Lilongwe District Health Office
and from local chiefs. Confidentiality and anonymity of data were assured by assigning
ID numbers during FGDs. All participants in both the KIs and FGD provided both oral
and written informed consent. Voluntary participation was emphasised. Participants
were advised to respect and keep in confidence each other’s contributions.
Refreshments were offered at the end of discussion as an appreciation for their time.
 CULTURE, HEALTH & SEXUALITY 5

Data management and analysis

Data analysis was conducted concurrently with data collection. All audio data from
interviews and FGDs were transcribed verbatim and translated from Chichewa to
English by the first author and three research assistants. Three transcripts were then
back-translated into Chichewa to ensure key meanings had not been lost in transla-
tion; there were no significant differences. The first author checked all the transcripts
against the audio recordings to ensure accurate transcription and translation. The
English language transcripts were used for analysis. We used a thematic approach to
analyse the data. ‘A thematic analysis is described as a method for identifying, analy-
sing, and reporting patterns (themes) within data’ (Braun and Clarke 2006, p. 82).
The process entailed carefully reading the transcripts sentence by sentence to
obtain a sense of the content as narrated by participants and compared to field notes.
Phrases and sentences related to awareness, attitudes and perceptions were coded in
the margins of the transcript sheets using the comment command under the review
tool in Windows. Codes with similar content were combined into subcategories, and
then into major categories (Braun and Clarke 2006). Nvivo 10 software was used for
data management. Several rounds of discussion between the co-authors took place to
strengthen the credibility and integrity of the findings (Creswell 1998). To ensure con-
firmability, all the co-authors reflected, discussed differences in the interpretation of
data and agreed on the final categorisations (Green and Thorogood 2009, 219–22).

Findings
Participant characteristics
A total of 20 KIs were interviewed. They included four health workers, eight commu-
nity leaders (chiefs), three community health volunteers, three church leaders and two
community-based organisation leaders.
A total of 11 FGDs were conducted, lasting between 50 and 90 minutes. Four FGDs
were conducted with community leaders (chiefs, aged 23 and upwards) and four with
women community members (aged 18–53 years). Only three FGDs were conducted
with male community members, because in one district (Salima) prospective partici-
pants did not turn up for discussion. The age range for male community members
was 18–48 years.
In total, 101 community members participated in the FGDs. There were more male
participants (n ¼ 60) compared to females (n ¼ 41) because participants in the commu-
nity leaders’ (chiefs) FGDs were largely men. Most FGD participants were married
(n ¼ 79); the majority had primary school education (n ¼ 55), 31 had secondary educa-
tion and 15 had no formal education. All participants were subsistent farmers living in
the rural areas where the FGDs were conducted.

Thematic analysis
Five main themes were identified: awareness, knowledge and perception about obstet-
ric fistula; attitudes towards women with obstetric fistula; perceived risk factors of
6 J. CHANGOLE ET AL.

obstetric fistula; perceived barriers to seeking health care; and suggestions for prevent-
ing obstetric fistula and discrimination.

Awareness, knowledge and perceptions about obstetric fistula

Nearly all participants in the 11 FGDs and the majority of the KIs had heard of or seen
a woman with a condition of leaking urine or faeces. Sources of information about
obstetric fistula included the radio and local fistula ambassadors, and some just sus-
pected certain women of having the condition due to smell. Some participants
claimed to have seen or lived with a woman with fistula in their villages. However,
nearly all participants reported that they did not understand the cause of the condi-
tion as reflected in the response below:
Yes, I have heard of this [condition] on the radio that some women … release urine, even
faeces, but are unable to stop it. But the problem is that I don’t know what causes this
problem. (FGD1, Men, Mitundu, Lilongwe)

In one FGD with community leaders, nearly all participants claimed to be aware of
the condition. However, when describing it, some participants described a man with
urinary leakage, despite being reminded by the moderator on several occasions to
focus only on women. These participants later explained that they had limited know-
ledge about women’s conditions due to women’s tendency to keep issues of child-
birth secret:
Ah, since the disease mainly affects women, for us men to really breakthrough, it
becomes difficult; because women keep secrets. (KI, Chief, Dowa l)

In five FGD sessions, participants were able to link the development of the condi-
tion to childbirth, but with varied forms of explanation. Possible causes ranged from a
torn bladder during childbirth to a ruptured womb, the inability to take care of a tear
caused by childbirth and the fact that an overdue pregnancy leads to a big baby. A
few of the descriptions closely reflected biomedical explanations such as:
This problem comes about due to childbirth, the passages meet. I have seen this
condition. The woman was pregnant and when she was due to give birth, she stayed
there [at the traditional birth attendant’s place] suffering for five days, and when she
went to hospital, she was told that she had been injured. So, all passages met, and she
was leaking urine. (FGD2, Chiefs, Salima)

A similar perspective was offered by another participant in a women’s FGD.

The person I am talking about, people said that, her womb was worn out, and because of
that, it got damaged, causing her passage for the baby, and that of urine and faeces to
meet, as a result she could not hold urine or faeces. (FGD4, Women, Mbavi, Lilongwe)

Due to lack of understanding, many participants used their own ways to explain
the origin of obstetric fistula. Some KIs and FGD participants associated it with an
operation having taken place at childbirth:
Yes, I have heard about it; especially one who stays over there. They did an operation of
childbirth [Caesarean section] on her. Since that operation, she just drains a lot of water.
(KI, Chief, Dowa)
 CULTURE, HEALTH & SEXUALITY 7

Another participant said:

This is not just beliefs, but people were saying that this woman has been found with this
problem because she was operated on at the time when she was giving birth [Caesarean
section]. (FGD1, Men, Mitundu, Lilongwe)

In the majority of the FGD sessions, participants said leaking urine or faeces was
caused by sexually transmitted diseases. They based their assumptions on the way the
victims smelled and the difficulties they had walking.
Mostly people in this community think that when a woman has such a condition, it
means that she has a disease; we call it siki in the local language, that is, in our local
beliefs. (FGD3, Men, Dowa)

In an attempt to clarify what the term siki meant, another participant said:
Just to concur with my friend here, when we say siki we mean diseases that you get
sexually like gonorrhoea, syphilis, bubo; all these diseases are termed together as siki.
(FGD3, Men, Dowa)

Another prevalent belief was that obstetric fistula develops when the woman is too
lazy to push out the baby or is afraid to give birth.
The main thing I see is that it is an issue with childbirth, as I have pointed out that
immaturity of the body, or fear to give birth. We say fear giving birth because we see
that maybe due to pain the woman fears to push, … as such the baby also stops at the
same place, so the person gets injured. (KI, Village Women’s Counsellor, Salima)

In two FGDs, participants attributed obstetric fistula to infidelity.

Beliefs are there … that, when a person is releasing urine and faeces, it means during
pregnancy her husband diverted from the norm [anamusempha] by sleeping with another
woman while his wife was expectant. So, when a husband does that, his wife’s passage
for the baby gets closed during delivery. (FGD1, Men, Mitundu, Lilongwe)

In three FGDs, participants attributed the condition to witchcraft. They reported

that the individual was bewitched or she herself could be a witch:
We thought the person was under magic spell [wodamcheza] through other ways. Like
here, it is believed that, it could be by her first husband who could have cast a spell on
her so that the woman is torn [wakasika]. (FGD3, Chiefs, Dowa)

Attitudes towards women with obstetric fistula

Different opinions emerged from the focus groups and interviews. In over half of the
FGD sessions, participants declared that women with obstetric fistula were laughed at,
disrespected and discriminated against at events such as wedding celebrations and
funerals. They were not allowed to prepare food in communal ceremonies, because
they were considered dirty. In some cases, these women were isolated and made to
eat alone.
Just to agree with the others, the thing is, wherever these people sat, you could see
wetness and flies roaming about. So, people would say, ‘Oh, no, you can’t sit near them’.
But as already pointed out by others, we were ignorant of what it was. (FGD4, Women,
Mbavi, Lilongwe)
8 J. CHANGOLE ET AL.

Participants provided examples of some stigmatising expressions as described below:

Sometimes people think that she was a loose woman, so they would say, ‘Ah, this one
does not refuse men; that is why she met that problem’. (FGD3, Men, Dowa)

On occasions where women were reported as being isolated, reasons for this isola-
tion included ignorance of the cause of the problem, and the belief that it was self-
inflicted through laziness at childbirth or promiscuity. Furthermore, some just thought
the women were filthy because they did not care for themselves, as reflected in the
following quotations.
… this side-lining comes because this person smells. Some side-line her for not knowing
what kind of disease it is, only thinking that this is a ‘disease’ [STD], … since the disease
is new here. (FGD4, Chiefs, Mbavi, Lilongwe)

We used to discriminate against them out of ignorance … we only looked at them

as … unhygienic, filthy people; because of the bad smell which we smelt. (FGD1, Women,
Mitundu, Lilongwe)

In contrast, in some FGDs and KI interviews, participants claimed that the women
were not isolated in their communities but separated themselves for fear of being dis-
covered. Reasons for accepting them were sympathy and fear of retaliation, should
they too be found in a similar situation. One participant said:
Most people … do not isolate them, because she is our fellow human being. So mainly,
we persevere with them … Because people think that what has happened to that person
can equally happen to me. (KI, Chief)

Perceived risk factors for obstetric fistula

Many participants mentioned early marriage, immaturity of the body, giving birth with
a traditional birth attendant, being poor and staying in the village, staying far from a
hospital, having a big baby and delay in going to hospital when labour starts as
causes of obstetric fistula.
Other participants argued that the condition could affect any woman of childbear-
ing age:
This problem sees no age. For example, myself, I have given ten births, but it may be
possible to suffer from this condition during the eighth or ninth birth; and suffer for the
rest of my life. (FGD1, Women, Mitundu, Lilongwe)

Perceived barriers to seeking care

Some participants acknowledged the existence of such women in their communities.
Women with such a condition are still there … but people tend to feel embarrassed
about the condition, they feel ashamed to come in the open. (FGD3, Men, Dowa)

Other presumed reasons for not seeking medical care included lack of money, dis-
tance to health facilities and lack of knowledge about where to get help.
 CULTURE, HEALTH & SEXUALITY 9

Some participants reported fear of hospital procedures such as a surgical operation

as a barrier to seeking medical help.
These people are afraid of going to the hospital. For example, a certain woman went to
Bwaila hospital to get some medical attention but came back before being treated
because of fear of being operated. (FGD1, Chiefs, Mitundu, Lilongwe)

Another participant concurred:

Here in the village people think that most people die during operation, that is why she
[woman] ran away from [the] hospital. (FGD1, Chiefs, Mitundu, Lilongwe)

Suggested ways of preventing fistula and discrimination

Nearly all participants suggested encouraging pregnant women to deliver at the hos-
pital where health workers would recognise a complication. They indicated that there
already existed by-laws in their communities that encouraged hospital delivery.
I repeat, in our villages we have by-laws that ensure that a pregnant woman goes to the
hospital by month number eight of her pregnancy to await delivery; to enable doctors to
attend to any birth-related problems on the pregnant woman. (FGD3, Chiefs, Dowa)

To reduce discrimination against women with fistula, participants suggested that

health workers should educate community members about the cause, prevention and
where to get treatment, as they presumed that discrimination was happening due
to ignorance.
The hospital in collaboration with community health volunteers should arrange training/
awareness sessions to help us know more about this disease. (FGD1, Men,
Mitundu, Lilongwe)

Lastly, some suggested that the only way to end the discrimination was to encour-
age women to be treated so that the leaking and the smell would stop, which would
in turn stop the stigmatisation.

Discussion
Women with fistula most often return to live in their communities, among relatives
and friends. Some are well integrated and continue their ordinary lives, while others
are more or less socially excluded or even expelled. Many women want to hide their
condition. As a result, communities may have difficulties understanding why and how
these women suffer. Often, there is a ‘culture of silence’ around the issue.
Study findings demonstrate that while there was a general level of awareness of
obstetric fistula, participating community members lacked detailed knowledge about
the mechanism of fistula formation; this led to misconceptions and a lack of compre-
hensive understanding about what is at stake for the suffering women. Some partici-
pants attributed fistula to sexually transmitted diseases, others to witchcraft or the
woman’s laziness to push the baby during delivery, as well as a childbirth operation
(Caesarean section) for the baby that caused the fistula. Often, these perceptions and
the symptoms of fistulae themselves lead to negative attitudes towards women with
fistula and the stigmatisation of these women.
10 J. CHANGOLE ET AL.

Misperceptions observed in our study are consistent with those documented in pre-
vious research (Kasamba, Kaye and Mbalinda 2013; Keri, Kaye and Sibylle 2010). These
misperceptions may arise from the participants’ lack of knowledge about how fistula
comes about, as acknowledged by the participants themselves. The association of fis-
tula with sexually transmitted diseases is in a way not surprising, considering the simi-
larities in the organs affected and some of the symptoms of the condition.
Unfortunately, sexually transmitted diseases are often socially associated with ideas of
sexual behaviour that deviates from the approved norm, attracting ridicule and stig-
matisation (Alonzo and Reynolds 1995), and this consequently hinders health care
seeking behaviour (Gjerde et al. 2012; Chaudoir, Earnshaw and Andel 2013).
Our findings also highlight the role of cultural beliefs in fistula formation.
Consistent with previous studies (Phillips, Ononokpono and Udofia 2016; Seljeskog,
Sundby and Chimango 2006), participants viewed fistula as a self-inflicted condition
by associating it with laziness to push the baby during delivery. Such beliefs may con-
tribute to the delayed referral of women with obstructed labour (Wall 2018), as the
woman, herself or her family members might wish to prove that the woman is strong
enough to endure labour and delivery, causing damage in the process and increasing
the risk of fistula formation.
The association of fistula with Caesarean section in our study, as noted by a previ-
ous researcher (Keri, Kaye and Sibylle 2010), raises great concern. While it has been
demonstrated that postoperative fistulae may indeed develop as a result of poor sur-
gical techniques and poor-quality emergency obstetric care (Onsrud, Sjøveian and
Mukwege 2011), a timely Caesarean section is the recommended treatment for
obstructed labour. This treatment improves maternal and infant outcomes, and poten-
tially prevents fistula due to obstructed labour (Wall 2018).
In this study, misperceptions were widely held among all types of informants, neces-
sitating interventions that target both community leaders and members, to prevent
exclusion, stigmatisation and isolation of the affected women. Having community lead-
ers’ involvement and leveraging their influential positions may help dispel the miscon-
ceptions among themselves and those of their community members and contribute to
community integration of the affected women (Nyblade et al. 2008). Future campaigns
underway in Malawi to end obstetric fistula, such as those of the Freedom from Fistula
Foundation, should involve community leaders. Campaign efforts should take into
account the cultural meanings attached to fistula and develop messages that can both
educate and dispel the misperceptions about obstetric fistula, as well as suggest ways
to encourage the integration of affected women back into the community. Importantly,
because of the low educational level of the majority in the rural areas, the messages
should be simple and specific on the causes of fistula, mechanism of formation, preven-
tion and treatment. This recommendation has the potential to equip communities with
knowledge to create a better childbirth environment for women, and to make informed
decisions when a woman is in labour, consequently preventing new cases of fistulae.

Strengths and limitations

The major strength of this study is that participants were members of the commun-
ities in which women with fistula lived, thereby allowing for an in-depth
 CULTURE, HEALTH & SEXUALITY 11

understanding of the contextual difficulties these women might have faced in interact-
ing with community members.
The selection of participants took into consideration the hierarchical nature of the
local social structure (community leaders and community members as well as key
informants), which is a good foundation for future interventional studies. The triangu-
lation of data collection methods and sources helped to strengthen credibility and val-
idity of the study findings. The exclusion of women with fistula from the FGDs made
it possible for the included participants to freely express their views without being lim-
ited by feelings of guilt or blame due to the presence of a woman with fistula.
However, our study also had some limitations. The first author is a nurse/midwife
and is well conversant with obstetric fistula, which may have biased the way questions
were phrased. To minimise this effect, interview questions and FGD guides were devel-
oped in close collaboration with the second and third authors. Peer debriefing ses-
sions were also held during the data collection and analysis phases.
Another limitation is that FGDs were only conducted in selected areas of the central
region of Malawi. As such, we may have missed some perspectives and cultural varia-
tions, especially those from the northern part of the country where data on the sub-
ject are more limited than the other parts of the country.
While findings from this study may be relevant to other similar settings, they can-
not be generalised because of the purposive nature of the sample.

Conclusion
Our findings demonstrate that in the settings sampled there is basic awareness about
fistula but very limited knowledge about its aetiology, thereby leading to misconcep-
tions. This potentially subjects women with fistula to discrimination and stigma.
Participants’ views and practices stress the importance of long-term strategies to eradi-
cate obstetric fistula in general and its social consequences in particular. This must
include more information about causes and prevention. Rural communities need help
linking fistula to prolonged, obstructed labour. This may help them to make prompt
informed decisions about place of delivery when a woman is in labour. It may also
help dispel misconceptions about fistula, increase disclosure about the condition and
increase community acceptance and support for women with fistula, consequently
improving women’s quality of life.

Note
1. Fistula ambassadors are former patients and men or women who volunteer to create
awareness and direct fistula patients to Bwaila hospital for treatment.

Acknowledgements
We are grateful to community leaders and members who participated in our study for their
time and information. We are also grateful to the fistula ambassadors and staff at Bwaila Fistula
Care Centre for their help in connecting us to the communities from where the women came.
We thank the three research assistants (Patrick Kuluwemba, Mphatso Chimphwanya and
12 J. CHANGOLE ET AL.

Margret Mamera) for help with data collection and transcription. Special thanks to Omero
Mwale for his input during manuscript development. We are grateful to Ekaterina Bogatyreva
for editing support.

Disclosure statement
The authors declare that they have no competing interests.

Funding
No funding was received for this study.

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